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2 State of Michigan Governor - Rick Snyder Michigan Department of Community Health Director - James K. Haveman Michigan Department of Community Health Mental Health and Substance Abuse Administration Deputy Director - Lynda Zeller Michigan Department of Community Health - Medical Services Administration Deputy Director - Stephen Fitton Department of Human Services Director - Maura D. Corrigan Department of Human Services, Children s Services Administration Director - Steve Yager Michigan Department of Military and Veterans Affairs Director and Adjutant General for Veterans Affairs - Maj. Gen. Gregory J. Vadnais Michigan Department of Education Superintendent - Michael Flanagan Michigan Department of Education - Office of Special Education Director - Eleanor White Southeastern Michigan Traumatic Brain Injury System Project Director - Robin Hanks Brain Injury Association of Michigan President - Michael F. Dabbs Michigan Public Health Institute Executive Director - Jeffrey Taylor This document was prepared by the Center for Data Management and Translational Research at the Michigan Public Health Institute. Thanks to all who reviewed drafts of this document and who submitted information. This document was supported in part by a grant from the Department of Health and Human Services (DHHS) Health Resources and Services Administration, Maternal and Child Health Bureau (Grant H21MC06747). The contents are the sole responsibility of the authors and do not necessarily represent the official view of DHHS. Version Michigan Resource Guide for Persons with Traumatic Brain Injury and their Families

3 My Health Care Information Dear user: We have added this portable profile to the Michigan Resource Guide. As you contact public and private providers, many will ask you questions about your history or heath care/rehabilitation needs. We suggest that you fill it out in pencil and change the information to keep it up-to-date. We hope that this will help you organize your personal health care information. This information is about (name): This book belongs to: Phone: ( ) If this book gets lost, please send it to this address: (Street) (City) (State) (Zip) My medical condition(s) is/are: My risk factors due to TBI are: In Case of Emergency Emergency contact: Phone: ( ) My hospital: City: My medical doctor: Phone: ( ) I have a guardian (circle one): NO or YES (if yes, complete below) Guardian name: Phone: ( ) I have advanced directives (circle one): NO or YES My last flu shot was (date): My last pneumonia shot was (date): I have allergies to: MICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES i

4 My Insurance for Problems RELATED to My Injury Name of Insurance: Claim #: Case manager name: Phone: ( ) My Insurance for Problems NOT Related to My Injury Name of Insurance: Policy #: Medication Information My Pharmacy: Phone: ( ) My Medications: Medication Name Medication Dosage Why I take this medication When I take this medication Rehabilitation Information My Rehab Doctor: Phone: ( ) My Rehab Program Contact: Phone: ( ) Equipment I use in order to be independent: The company/person that fixes my equipment: Company/person s Phone: ( ) I am independent in the following tasks: I need help with the following tasks: ii MICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES

5 My Major Medical Events Test or treatment performed Location of treatement Date Frequently Called Numbers Organization Phone Number Notes MICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES iii

15 How to Use this Guide The goal of the Michigan Resource Guide for Persons with Traumatic Brain Injury and Their Families is to help direct people to appropriate state and local services. In Michigan, many traumatic brain injuries (TBI) (about 30%) are caused by car crashes. The services provided to such persons with TBI through automobile insurance companies are typically very good and comprehensive. This Guide is primarily meant for the remaining 70% of persons with TBI who are dependent on other forms of medical coverage and financial aid. Introduction The Guide presents information on financial aid, medical care insurance or aid, housing, education, vocational TIP rehabilitation, legal aid and advocacy, mental health, and transporta- Agencies or resources are listed in alphabetical order rather tion services. Sections I-III offer information followed by a listing and descrip- than in order of importance. In some sections, there are many tion of agencies or resources that provide services or information relating to agencies or resources listed and you might not know whom the topic. Note that not all resources to call first. Hints provided in or programs are available to everyone. For such programs, eligibility crite- boxes labeled TIP are meant to guide you through the processria are listed along with a description of the program. Section I explains what TBI is, its symptoms, and the impacts on individuals and families. The section presents information on the number of individuals who get a TBI. Important laws about the rights of persons with disabilities are described. This section also supplies a list of important organizations that provide general information, advocacy and other services to individuals with TBI and their families. A list of books written by persons with TBI is also included. Section II provides information on frequently needed services that are available in Michigan. To help readers get services in their community, information about state agencies and other resources are listed. This list does not include all direct service providers in your area. The organizations listed are statewide organizations that should be able to put you in touch with service providers and other resources in your area. M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES 1

16 Introduction Section III gives information on potential sources of financial aid to pay for needed services. Eligibility information for these state and federal programs is given. Financial aid and medical care coverage programs specifically for children and veterans are also discussed. Section IV provides an overview of the main agencies and resources described throughout the Guide. If you are looking for a specific service, turn directly to the tables in Section IV to find agencies that offer the service, referral or financial aid. Also check the appropriate section as listed in the Table of Contents, as some resources are not in the tables. Section V lists the contact information for all agencies and resources discussed in the Guide, along with the pages on which they are discussed. The frequently called numbers table in the front of this Guide under My Healthcare Information is provided for you to make a note of numbers you call often. Section VI is a glossary. Since many of the programs listed in this Guide come from federal or state statute, the terms may be confusing or unclear. This glossary is meant to help you understand these terms. Please note: At the time this Guide was published, the accuracy of all contact and program information was verified; however, changes in addresses, telephone numbers and programs do occur. Some steps to follow when looking for services: Identify current needs for treatment and services Contact the appropriate organizations Communicate with your insurer Identify other possible funding sources 2 M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES

17 Tips to help in the application process: Maintain a journal to chart progress Keep your paperwork organized Ask for copies of all records/paperwork Have documents, such as your insurance card or medical information, available Keep a list of contact information (names, phone numbers, and addresses) for all persons you talk with Keep written records of all communications and write down the name of the person you speak to When calling organizations, ask if there is a person available who specializes in TBI Introduction What if a Needed Service Is Denied? It is not uncommon for a request for services or financial aid to be initially denied, and later approved upon appeal. Whether dealing with state agencies or private insurers, consumers or their advocates have a right to appeal any denial that they feel was made in error. Many agencies have on-site advocates who can help settle disagreements and other concerns that individuals You or your advocate TIP may have regarding delivery or denial of services, may have to be persistent to make sure your financial support, or other matters related to the agency. Ask someone from the agency how to file medical problems are an appeal or complaint. It is important to have taken seriously. documentation of services, denials and other important records to support your appeal or complaint. Having an advocate may be very important for persons with TBI. Advocacy support may involve appealing denials of service or financial coverage, or explaining limitations in detail. A person with TBI may have a range of advocacy needs. Often, a family member or other person may act as an advocate to assist in getting needed services. You may also want to seek out the services of M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES 3

18 Introduction an advocacy organization or even a lawyer. Advocacy organizations can help you understand why services were denied and whether or not you are entitled to services. They can also offer advice on what steps to take next, and if similar services are available elsewhere. In some cases, such as in denial of Social Security benefits, obtaining a legal advocate to assist in the appeals process is wise. See the section on Advocacy Organizations and Legal Services on page 17 of this Guide. 4 M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES

21 What Is Traumatic Brain Injury? A traumatic brain injury (TBI) is defined as a change in brain function, or other evidence of physical changes/disruption of normal function (brain pathology), caused by an external physical force. However, not all bumps on the head result in TBI. TBI may or may not be combined with loss of consciousness, an open wound, or skull fracture. Typical causes of TBI: Falls Assault Motor vehicle-traffic Struck by/against Sports injury Section I. Acquired Brain Injury An aquired brain injury (ABI) is an injury to the brain that occurs after birth, which is not hereditary, congenital, degenerative, or induced by birth trauma. TBI is a type of ABI. Typical causes of ABI: Stroke Substance abuse Near drowning Infectious disease Seizure disorders Tumor Electric shock Toxic exposure Lightning Severity of Brain Injury Based on the length of time the person was unconscious, without memory, or confused, TBI can be classified as mild, moderate, or severe. Usually, someone with a mild TBI will recover fully. However, since there are cases of people with mild TBI who have lasting disability from their injury, it is important not to dismiss the potential seriousness of such an event. Also, if a person experiences mild TBI more than once the results may be worse than if only one mild TBI occurs. Emergency personnel evaluating an individual who recently sustained a brain injury typically assess the severity of a brain injury by using an assessment called the Glasgow Coma Scale (GCS). The scale, which generates a score M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES 5

22 between 3 and 15, comprises three tests: eye opening, verbal responses, and motor responses. Section I. Note: There may be no correlation between the initial GCS score and the initial level of brain injury and a person s short or long-term recovery or functional abilities. Mild Traumatic Brain Injury The occurence of an injury caused by a blow or jolt to the head involving any one of the following: Any period of loss of consciousness does not exceed 30 minutes Post-traumatic amnesia does not exceed 24 hours Initial Glasgow Coma Scale score of Traumatic Brain Injury Is Common Over 52,000 people die from TBI in the United States each year and 275,000 are hospitalized. Many more are treated and released from hospital emergency departments, seek care in a doctor s office, or do not seek care at all. 1 Michigan data show that each year about 12,000 Michiganders have a serious TBI - one that leads to hospitalization and/or death. Men are more likely than women to sustain a TBI at any age. In Michigan, the elderly, babies, and young adults are at particular risk for TBI. 2 1 Faul M, Xu L, Wald MM, Coronado VG. Traumatic brain injury in the United States: emergency department visits, hospitalizations, and deaths Atlanta (GA): Centers for Disease Control and Prevention, National Center for Injury Prevention and Control; to 2008 Hospital Discharges from the Michigan Inpatient Database and Mortality Data from the MDCH Division of Vital Records and Health Statistics. 6 M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES

23 This graph shows the leading causes of TBI in the United States by percentage. Typical Causes of TBI in the U.S. 3 Percentage of TBIs 40% 35% 30% 25% 20% 15% 10% 5% 0% 35% Falls 17% Struck By/ Against 10% Assault 17% Motor Vehicle 22% Other Section I. This graph shows the estimated average annual number of TBI and ABI in the United States. Annual Incidence of TBI and ABI in the U.S. 4 Number of people 2,000,000 1,500,000 1,000, ,000 1,700, ,000 0 TBI ABI Effects of Traumatic Brain Injury The brain is a very complex organ, and each injury is different. Therefore, the path to recovery and rehabilitation is difficult to predict. The symptoms of TBI may not be obvious at first, especially when combined with serious physical injuries. Outcomes can range from no apparent effect to severe impairment. Friends and family should note that if the person experiences mild TBI more than once, the results may be worse than if only one mild TBI occurs. It is important to acknowledge the potential seriousness of such events. 3 Centers for Disease Control and Prevention. National Center for Injury Prevention and Control (2010). What are the Leading Causes of TBI? 4 Centers for Disease Control and Prevention. National Center for Injury Prevention and Control (2010). Facts Annual Number of TBIs. M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES 7

25 Effects on Families Families of persons with TBI are affected when changes in personality, behavior, or physical ability become obvious and persist. Emotional or sexual relationships with the injured person may change. Family members may have to spend a lot of time caring for the injured person. The physical and emotional strain of caregiving may cause rifts and resentment among family members. This may TIP lead to anxiety, stress, guilt, loneliness and Many of the references listed depression. 9 If the injured person was the in this Guide are websites. main financial provider, the family could The Internet can be the fastest and easiest way to find also experience income losses every year made worse if other family members no information. longer have time to work because they have to care for the individual. During this If you do not have a computer, you may be able to access stressful time, a family member may have difficulty finding and getting desperately the Internet from a computer needed benefits. at your local public library. Section I. Family members may need support to fulfill their new roles, including emotional and social support from others in similar situations, and the chance to take a break from caregiving tasks. In addition, they may need help and advice to get crucial benefits. Family members may need to be their own advocates in seeking care and social support for themselves. Important Laws The Americans with Disabilities Act (ADA) The Americans with Disabilities Act (ADA) is a federal law that protects millions of Americans with disabilities from discrimination and reaffirms their civil rights. The ADA is designed to make American society more accessible to people with disabilities. Some of the 9 Kreutzer, J.S., (1998). Consequences of Traumatic Brain Injury for the Family. NIH Consensus Development Conference on Rehabilitation of Persons with Traumatic Brain Injury, p. 14. M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES 9

26 guarantees under the ADA include: Section I. Employment: The ADA oversees all business practices including hiring, firing, wages and benefits. Businesses must provide reasonable accommodations to meet the needs of employees with disabilities unless these changes would produce undue difficulty or expenses, which are determined by specific guidelines. Public Services: The ADA specifies that state and local government entities (e.g., school systems, park districts, etc.), including public transportation systems (e.g., buses, trains, etc.), provide equal access to their services and programs for individuals with disabilities. Public Accommodations: All new and existing public accommodations that provide services to people must be accessible to individuals with disabilities. Public accommodations include facilities such as restaurants, hotels, grocery stores, and retail stores, as well as privately owned transportation systems. Telecommunications: Telephone companies must provide relay service to individuals who use telephone systems for the deaf (TTY). An ADA Information Line is available for general ADA information, answers to specific technical questions, and free ADA materials and information about filing a complaint. ADA Information Line: (800) ADA Information Line (TTY): (800) Website: Fair Housing Act Title VIII of the Civil Rights Act of 1968 makes it illegal to discriminate in matters related to buying, financing, or renting homes and apartments because of race, national origin, disability, or other characteristics. For more information on the Fair Housing Act, please refer to page 31 in the Living and Care Arrangements section. 10 M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES

27 Individuals with Disabilities Education Act (IDEA) This act sets requirements for special education in public schools. For more information about IDEA, please see the Public Education section on page 43. Olmstead Decision This important Supreme Court decision held that unnecessary segregation of individuals with disabilities in institutions is discrimination. Please refer to page 31 in the Living and Care Arrangements section for more information about the Olmstead Decision. Section I. Persons with Disabilities Civil Rights Act (Public Act 220 of 1976) This Michigan law prohibits discrimination based on disability in the areas of employment, housing, public accommodations (businesses serving the public), public services, and education. Moreover, it specifies that reasonable accommodations must be made for persons with disabilities in these areas. Anyone who is denied equal opportunity in these areas may file a complaint with the Michigan Department of Civil Rights. Please see page 19 for more information. General Resources A number of national and statewide agencies and organizations offer information and referrals for individuals with TBI. Although the type of service available differs for each agency, these agencies are a good starting point for learning more about TBI, locating a specific resource, or determining the types of services needed. BRAIN INJURY ASSOCIATION OF AMERICA (BIAA) BIAA is a nonprofit organization that brings together persons with TBI, their families and friends, concerned professionals, and their communities. There are state affiliates throughout the country. This agency is a M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES 11

28 good overall referral source for information, services, and products (such as audiotapes, books, and videos). Section I. Phone Number: (703) National Brain Injury Information Center: (800) Website: Additional Contact Information: See page 82 BRAIN INJURY ASSOCIATION OF MICHIGAN (BIAMI) BIAMI works to improve the lives of those affected by brain injury through education, advocacy, research, and local support groups. They also seek to reduce the number of brain injuries through prevention. BIAMI is a key source of information for brain injury services in Michigan. Books, videos, and customized information packets, as well as an annual educational conference, serve as resources for families and persons with brain injury. Local chapters and support groups throughout Michigan offer individuals with brain injury and their families support, local information, and activities. Phone Number: (810) National Brain Injury Information Center: (800) Website: Additional Contact Information: See page 82 CENTERS FOR INDEPENDENT LIVING (CIL) There are 15 CIL in communities throughout Michigan. CIL provide services to integrate people with disabilities into the community. Services offered may include advocacy; resource and referral information pertaining to housing, transportation, community services and programs; peer counseling; independent living skills training; support groups; and recreational events. Some CIL offer services specifically designed to meet the needs of persons with TBI. Phone Number: To locate the nearest CIL, look in your phone book or contact the Disability Network/Michigan (517) M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES

29 Website: (see member locator for local office contact information) Additional Contact Information: See page 83 DEPARTMENT OF HUMAN SERVICES (DHS) ADULT SERVICES DHS - Adult Services provides Adult Protective Services; Independent Living Services that includes Home Help Services; and Adult Community Placement, which assists in locating Adult Foster Care Homes (AFC) and Homes for the Aged (HA) for adults who are unable to live independently. AFC/HA services include authorizations for the Medicaid Personal Care Supplement to these facilities. Section I. To be eligible: Adult Protective Services are available to all vulnerable adults who are at risk of harm from abuse, neglect, or exploitation regardless of the adult s income and assets. Information and referral services are available to everyone, including information on Adult Foster Care and Homes for the Aged. Medicaid eligibility is required to receive DHS direct services, such as Home Help Services and the Adult Foster Care/Home for the Aged Medicaid Personal Care Supplement. DHS Adult Services staff may assist customers in applying for Medicaid. Phone Number: Check the phone book for your local DHS office or call the Lansing office and ask for the phone number for the county in which you live (517) Website: Additional Contact Information: See page 85 DISABILITY.GOV This website is a comprehensive source for disability-related information and resources at the federal level. The site also has a state and local resources map to assist visitors in finding disablity-related information in their own states and localities. The website includes nine subject M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES 13

30 tabs with information in the following areas: benefits, civil rights, community life, education, employment, health, housing, technology, and transportation. Section I. Website: Contact Information: See page 86 EPILEPSY FOUNDATION OF MICHIGAN Epilepsy Foundation of Michigan provides education and consultation services, public awareness, camp programs, support services, advocacy, and employment guidance for people with epilepsy, their families, and the general public. Phone Number: (800) Website: Additional Contact Information: See page 86 MICHIGAN DEPARTMENT OF COMMUNITY HEALTH (MDCH) TRAUMATIC BRAIN INJURY (TBI) GRANT The MDCH TBI Grant is funded by the State of Michigan and the federal Health Resources and Services Administration-Maternal and Child Health Bureau to improve public services for TBI in Michigan. The Grant produces information for people with TBI, their families, and service providers (including this Guide). To learn more about the Grant, visit Free online training about TBI is available at Phone Number: (517) Website: Additional Contact Information: See page 90 NATIONAL RESOURCE CENTER FOR TRAUMATIC BRAIN INJURY (NRC FOR TBI) This is a national nonprofit center committed to providing practical 14 M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES

31 and relevant information to persons with TBI and their families. The NRC for TBI is a valuable resource for many different services and questions. The NRC for TBI produces a guide titled The Brain Injury Source Book: Answers to Questions Most Often Asked by Family & Survivors. Phone Number: (804) Website: Additional Contact Information: See page 94 Section I. UNITED CEREBRAL PALSY (UCP) OF MICHIGAN This nonprofit organization provides information about housing, special education, employment, technology and equipment, public benefits, and transportation. UCP Michigan has expertise in cerebral palsy, disability rights, and disability services. Anyone with a disability can call UCP for assistance. Phone Number: (517) (800) (Michigan Only) Website: Additional Contact Information: See page 97 UNITED WAY United Way organizations serve people in their community directly or in collaboration with other local nonprofit organizations. United Ways frequently offer a program called First Call for Help. This is a local telephone number (dial 2-1-1) that people in need may call and immediately be referred to the community service(s) that can help them. In Michigan, there are approximately 60 local United ways. Phone Number:(517) or call for resources Website: Additional Contact Information: See page 97 M ICHIGAN RESOURCE GUIDE FOR PERSONS WITH TRAUMATIC BRAIN INJURY AND THEIR FAMILIES 15

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